Up until then, he insists, he never really thought of himself as all that different. He played any sport he could, went for pints at the pub, got top grades, made tons of friends.

It was only when he met someone else with Hunter syndrome that he realized he had been living in an uneasy hinterland, somewhere between belonging and being alone.

In a conference room in Dallas, he encountered another young man who was short like him (Ibell is four-foot-eight), had distinctive features like him, and sometimes struggled for breath like him. He found someone else who was being propelled toward death by the same rare, unrelenting disease.

"It was the first time I realized there are other people who go through what I go through," says the Torontonian, now 31. "It was a weight lifted off my shoulders."

Hunter syndrome, or mucopolysaccharidosis II (MPS II), is one of a group of six rare metabolic disorders. People with MPS diseases lack an enzyme needed to break down long chains of sugars, called mucopolysaccharides, in their cells. Over time, the sugar chains, which are used to build bone and connective tissue, accumulate to dangerous levels. The backlog of waste damages organs and can lead to death.

Seven years after that MPS conference in Dallas, Ibell is a household name among the 2,000 people around the world with MPS II, and a hero to the 30 in Canada.

"He's so confident and believes so strongly in himself...," says North Vancouver's Deb Purcell, whose son Trey, 5, was diagnosed with Hunter syndrome in 2006. "Simon is a beacon, a voice for all of us."

Ibell says finding a community of people with MPS was a turning point in his life, triggering his decision to become an advocate for people with rare diseases.

In 2003, he participated in a clinical trial for an experimental drug to treat MPS II. Elaprase, which uses synthetic enzymes to break down the cellular waste, can stop the progression of MPS, and Ibell's health is now stable.

That same year, he was named the Canadian Spirit of Sport Story of the Year for having biked 500 kilometres over 10 days on Vancouver Island, raising $250,000 for MPS diseases. Ibell was flanked by high-profile athletes, including his good friend, basketball superstar Steve Nash, and Olympic triathlete Simon Whitfield. His story beat out those of Olympic gold medal champions Beckie Scott, now also a close friend, and figure skating duo David Pelletier and Jamie Salé.

Most recently, Ibell convinced the Ontario government – again with the help of his friend "Nashy" – to cover the cost of Elaprase for most of the 10 other MPS II patients in the province. At a cost of roughly $400,000 per person per year, the drug is one of the most expensive ever developed.

And still Ibell, who works full-time in Toronto as the athlete relations and communications manager at Right to Play, an international organization that uses sports to improve children's lives, is not done.

He's raising money to create the world's first medical centre dedicated to MPS diseases. To be affiliated with the University of North Carolina at Chapel Hill, it will be a one-stop shop for MPS diagnosis, treatment and support. "My next goal," he says, "is to find a cure."

WHEN IBELL WAS born on Dec. 6, 1977, his mother revelled in his thick brown hair and dark eyes.

"He was a gorgeous baby," Marie Ibell recalls. "The doctors said he would grow to be six-foot-three."

But as he was entering the toddler years, Marie knew there was something wrong. He had trouble walking, and often fell.

The diagnosis of Hunter syndrome, which came after months of doctors' appointments, was devastating. People with MPS II face a variety of symptoms, including cardiac problems, hearing loss, obstructive airway disease, limited mobility, developmental delay and enlarged livers and spleens.

At the time, doctors said they knew of only four other children in the world with MPS II. "They told us ... that every organ would be affected," says Marie. "They said he wouldn't live until he was 2."

After his second birthday, doctors advanced their prediction by three years. When Ibell was 5, his parents were told their son would die before he turned 10.

Ibell was 6 1/2 when doctors at the Hospital for Sick Children told Marie to put her son in a wheelchair. Any kind of activity, especially sports, should be avoided, they said.

Marie would have none of it.

"Simon and I left that office, went out and bought him new soccer boots and goalie pads," she says, her chin still jutting in defiance.

Soon, Ibell was kicking soccer balls and goaltending hockey in local leagues. And his parents signed him up for bowling, squash, badminton and private swim lessons at the Granite Club, near their Rosedale home. At the time, Simon's father, Roger, was a banker, while Marie was a senior executive with the Hudson's Bay Company.

"It's always been inclusive for me," says Simon. "That's probably the number-one service my parents did for me."

In between school and sports, the Ibells searched for a treatment for their son, travelling to 27 different countries looking for help. But they found none. In 1990, when Ibell was 12, the family moved to Victoria to be near a Seattle hospital known for its expertise in bone-marrow transplants, which doctors thought might be a solution for MPS II.

But that hope, too, fell through. And by then, Ibell, who was heading into Grade 8, had had enough.

"When I was 14, I said, `Just let me be, let me be Simon.' I just didn't want to be poked and prodded any more. I just wanted to live my life."

And so the search stopped.

IBELL HAS A a vast network of friends. Besides Nash, Whitfield and Scott, in the world of sport there's also the Raptors' head coach, Jay Triano, basketball player Dirk Nowitski and mountain biker Roland Green. Others are from the MPS and rare-disease communities. Others still are school and university chums and work colleagues.

"Simon is outgoing, warm, funny and sincere," says Scott, who now works with Ibell at Right to Play. "He is an engaging person, and you can't help but want to be friends with him and hope that he will take you into his circle."

"What first caught my attention was that they (Nash) called him `small balls' and he loved it," says Mark Cuban, the American billionaire and owner of the Dallas Mavericks who was introduced to Ibell by Nash in 2000. The two have been firm friends since.

"Simon," he writes in an email to the Star, "is the guy you were great friends with growing up and you stayed in touch with because he is so much fun to be around."

When Ibell was younger, not everyone could see past his physical differences. People with Hunter syndrome are shorter than their peers. They are likely to have a high forehead, flat-bridged nose, enlarged tongue, distended abdomen and stiff, sometimes curling, joints.

Ibell enrolled in private St. Michael's University School, comparable to Upper Canada College, when the family moved to Victoria (his parents subsequently split, and his father went to Montreal). He was the school's first student with a visible disability.

A few months into eighth grade, a group of boys sent Ibell a cartoon strip that depicted him in a wheelchair (he's never used one) careening off a cliff into the ocean, where fish promptly ate up the cartoon Simon. The caption read: "St. Michael's is not for the deformed."

The four students were caught and threatened with expulsion. But Ibell convinced the headmaster to keep them in school, says Marie, so that they could learn to get over their prejudices.

Weeks later, after the headmaster had told the rest of the school about the incident, Ibell was running a race at a school track meet. Everyone else had crossed the finish line, but Ibell still had two laps to go.

"By the time Simon was finishing the fourth lap, the entire school was standing, shouting `Si-mon, Si-mon,'" Marie recalls. "After that, they had an incredible level of respect for him."

Once Ibell's condition prevented him from playing sports, he moved to the sidelines, where he managed the high school basketball and rugby teams. He continued in that role while studying at the University of Victoria. And each summer, he managed the Canadian national men's basketball team, an opportunity Ibell calls "a dream come true."

He says sports gave him the confidence and tenacity he's needed in his fight for rare diseases. Nash, who was four years ahead at St. Michael's, says Ibell is "a remarkable person, and you feel that from the moment you meet him.

"I'll always stand behind Simon. He's a close friend and a champion for many people and causes. What he and other kids face with MPS is something we'd like to change, and Simon has made a big impact on that reality already."

IT'S A SUNNY summer afternoon, and Ibell is sitting in his sixth-floor Rosedale condo, hooked up to an IV. For the next four hours, almost $8,000 worth of drugs will drip into his veins. The Elaprase molecules will find their way into every one of his 10 trillion or so cells, where they will break down the cellular waste that threatens to clog his organs.

Ibell must get this enzyme-replacement therapy every week. It's an inconvenience he never dreamed he would enjoy.

In the fall of 2003, when he qualified for a phase III clinical trial of Elaprase at the University of North Carolina at Chapel Hill, his health was deteriorating. His joints were stiff. His liver and spleen were three times the normal size. His lungs were so thick with mucus he sometimes could not catch his breath.

Being part of the trial meant commuting to North Carolina every week, which in turn meant moving back to Toronto and leaving his friends, his job as a business analyst and his master's degree research at UVic in sports psychology and human potential.

But by the end of the 18-month trial, the drug had halted the insidious progression of his disease.

Health Canada approved Elaprase in 2007. But Ontario decided the $400,000 per patient price tag was too big. Ibell fought back. Last summer, he and Nash launched their campaign, complete with a YouTube video that compared the Ontario government to people driving by the scene of an accident and doing nothing.

In September, the province decided to fund Elaprase. Ibell paused only a moment before turning his attention to his ultimate dream: the MPS medical centre.

There is no missing that steel core behind his mischievous grin, something he breaks out regularly.

Even now, with a nurse checking his vital signs every 15 minutes, Ibell displays social graces. He is that rare person who can create an instant connection with whomever he meets. His charisma dazzles.

Yet no woman has fallen for him. It's his only cause for sadness.

"He would love to have a family, love to have someone who would love him and who he could love," says Marie. Last month, she says, Ibell found a medical website that described people with MPS II as "gargoyle-like."

"You can imagine how that can hit you," she says.

But Ibell remains an optimist. After all, he often points out, the first four letters of his last name are the first four letters of "I believe."

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